Epilepsy and the Healthcare System
In your role as the parent or guardian of a child with epilepsy, you will come to know a variety of informed and dedicated healthcare providers. Some of the professionals who may treat your child include the following:
Primary care provider: a healthcare professional responsible for the coordination and comprehensive medical care of a patient. He or she will take care of general medical concerns such as well child care, infections, and physical injuries. It is important to pick a primary care provider that feels comfortable caring for children with seizures and epilepsy. The primary care provider should help you to find a well-suited neurologist for your child. The primary care provider usually works alongside the neurologist in caring for your child’s seizures, but usually the neurologist makes the final treatment recommendations.
Child neurologist: a doctor trained in diagnosing and treating diseases of the brain, nerves, and muscles in children. Most child neurologists care for children with seizures and epilepsy.
Epileptologist: a neurologist who received special training in the care of children with seizures and epilepsy.
Neurosurgeon: a doctor who performs surgery on the brain, spinal cord, or nerves in the body. Surgery may be considered if seizures are severe or difficult to treat. In some people with epilepsy, there is a localized area of brain causing the seizures which can be removed. The neurosurgeon may also be consulted for vagal nerve stimulator implantation.
Epilepsy nurse: a nurse who has received extra training in the care of children with epilepsy. These nurses can be found at many hospitals and clinics specializing in epilepsy.
Psychiatrist: a medical doctor trained to care for people with anxiety, mood, or behavioral concerns. A psychiatrist may recommend counseling, psychotherapy, or medication after a careful evaluation.
Psychologist: a mental health professional who provides a variety of therapy and counseling for individuals with anxiety, mood disorders, or behavior problems. Psychologists do not prescribe medication.
Social Worker: a social worker may help you and your family through several stressors that may be associated with caring for a child with epilepsy such as coping with diagnosis, family issues, financial issues (i.e. employment and health insurance), and school issues.
Neuropsychologist: a psychologist who specializes in assessing brain function in persons with central nervous system disorders. Neuropsychologists are trained to identify problems of learning, memory, knowledge, attention, and language using a series of standardized tests.
Organizing Your Child's Medical Information
It is very important to keep a record of your child’s medical information. We recommend purchasing a 3-ring binder in which to store the information.
Make a section for notes from your visits with the child neurologist. If your child sees other specialists, make a special section for each of them as well. Other sections might include EEG, MRI and CT, blood tests, and evaluations by the school or neuropsychologist.
Keeping a record of your child’s medications, both current and old, can be very useful. If a medication is stopped, write down why it was discontinued.
Log your child’s seizures on a calendar or simply write down the dates. Try to note the duration of the seizures and the seizure types.